I’m Still Not Comfortable Being an Inspiration to Others
Columnist Charlene Marshall dissects the idea of being called inspirational because of IPF
As a child in elementary school, I once earned the top grade on a project about inspirational people in Canada. I was fascinated by what made them inspirational to others, whether it was a marathon for cancer research by the late Terry Fox or a wheelchair race for disability awareness by Rick Hansen. I couldn’t get enough of their stories, so it was an easy project to finish, and my passion for researching people like them paid off when the teacher graded my work.
I participated in many leadership activities throughout elementary and secondary school, striving to discover what energized me most. I loved to fundraise for various causes or events dear to my heart, and my mom recently shared with me that she thought I’d be a professional fundraiser someday.
Growing up, I had many passion projects, and I often daydreamed about how to turn them into something inspirational like the people in my research project. I wanted to do something sensational and grand that would inspire others. Battling a chronic illness was not in that plan, and I certainly never imagined I’d one day be called inspirational because of it.
I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a debilitating and progressive lung disease that eventually steals one’s ability to breathe. I was fearful of many things after doctors told me I had IPF — mostly that I wouldn’t be able to travel — but it was never an option to stop doing what I loved. I was determined to live with this disease, even if it meant lugging around supplemental oxygen as a young adult.
Despite having IPF for six years and getting progressively worse, especially since having COVID-19, I’ve managed to continue doing many of the things I love. Shortly after my diagnosis, I went Jet Skiing in the ocean with a small oxygen cylinder on my back, and a few years after that, I went snowmobiling with a friend in the Whistler and Blackcomb mountains in British Columbia. I have also traveled to Hawaii and hiked in the rainforest, and developed a love for kayaking near home in the summer and autumn months.
While there are still many things I can do with IPF and supplemental oxygen, there are others I can’t. I miss playing hockey, swimming competitively, and running, all of which involve too much cardio for my heart and lungs to manage anymore.
How others see me
I recently shared with an acquaintance a list of things I’ve done since my diagnosis, and I initially couldn’t gauge her reaction. I wondered if perhaps she thought I was a risk-taker or that my decisions were unsafe. It turns out she was reflecting on what it would be like to do all of these activities while on oxygen. She called me inspirational.
I don’t know how to feel when someone calls me inspirational for living with IPF. Being unable to breathe is challenging, as is lugging around oxygen. But I don’t see it as inspirational. I see it as the only choice I have to live a life I enjoy. The alternative is to sit with all of the negative emotions I feel about having such a cruel illness — anger, fear, resentment.
I awkwardly tried to shrug off being called inspirational as if having IPF weren’t a big deal. But the person I was talking to gently challenged my thinking and reminded me that being inspirational to someone else is a subjective experience, and that she can’t imagine how difficult it is for me to function with such poor lungs. At that moment, I stopped trying to bury the comment and simply thanked her for her kind words.
Reflecting on the conversation now, I still don’t see myself as inspirational, especially compared with the people I researched for my school project. I suppose after all these years, my desire to inspire others has come true, but in the most unusual way. I am grateful for conversations like these, as they force me to reflect on some of the positive things that have emerged as a result of living with IPF — even if I don’t know how to feel about them in the moment.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.